ERNs paper proposing a 10-points crisis readiness plan for rare disease populations
The ERNs as a group published a position paper on crisis readiness. It proposes a…
August 6, 2026
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Discover our 3 new Patient Journeys!
EURO-NMD is pleased to introduce three new Patient Journeys, dedicated to: Amyotrophic Lateral Sclerosis (ALS)…
New publication highlights the role of European Reference Networks in genetic newborn screening
A new paper published in Frontiers in Public Health explores the key role of European…
Dr. Imelda de Groot Award 2026: applications now open
The Dr. Imelda de Groot Award is an incentive prize for care and innovation, initiated…
Joint Statement on Anaesthesia-Related Mitochondrial Pharmacogenetic Risk in Individuals with Venezuelan Maternal Ancestry
European Society of Anaesthesiology and Intensive Care (ESAIC) European Society of Paediatric Anaesthesia (ESPA) European…
Looking back at the Transition in Rare Diseases Workshop – Ghent, 27–28 February 2026
Two weeks ago, representatives from 22 European Reference Networks (ERNs) gathered in Ghent, Belgium, for the…
Registry Performance Update: 641 patients!
EURO-NMD Registry: Growing Participation Across Europe The EURO-NMD Registry, launched to support research and improve…
ALS Webinar Series
The Motor Neuron Diseases Working Group of EURO-NMD is proud to launch a special ALS…
Share your experience: Transition from Paediatric to Adult Care
The European Reference Network on Neuromuscular Diseases (ERN EURO‑NMD) is conducting a Europe‑wide anonymous survey to…
Multisystem Proteinopathies: Comprehensive Clinical, Radiological, and Histological Characterization in an International Multicentric Study
The John Walton Muscular Dystrophy Research Centre (JWMDRC) has initiated a descriptive, retrospective, international multicenter…
EURO-NMD Retrospective of 2025: A year of consolidation, innovation & collaboration
2025 was an exciting and productive year for EURO-NMD. Our network continued to grow, strengthen…
EURO-NMD Webinar Series: Peripheral Nerve Diseases – Charcot-Marie-Tooth Disease (CMT)
EURO-NMD is pleased to announce its January 2026 Webinar Series dedicated to Peripheral Nerve Diseases,…